How the World Changed in a Month

Roughly a month ago I restarted my cleanse diet. I didn’t have the miraculous return to health like the first time I tried it, as I established in the last post. I did, however, have a few weird and disappointing discoveries.

After abstaining for a while, I decided to have a bit of coffee. I rely on caffeine to get through a day awake, and I don’t have a problem with the caffeine in tea, so I thought this would be no big deal. I had a cup of an unidentified flavored coffee in my fridge, and it gave me a stomach ache. I gave it a few days, then tried again with organic, plain coffee and seemed to not react. I added cocoa powder (soy and corn free) and had the stomach aches like I had with gluten. I tried chocolate almond milk (again, soy and corn free) and had the same bad reaction. A friend suggested I try raw cocoa nibs, and again, the same. So far, I know I have a problem with cocoa and possibly coffee (unlikely, but still possible. I should test more once I am completely healed). On the bright side, I told this to the acupuncturist, and she did a treatment that should correct that problem. I have to wait until my gut has completely healed to try again, so we’ll just see.

I added rice and potatoes back, too, and the jury’s out as to whether they are a problem. These, too, will be retested after abstaining for awhile. How does a person get so many devastating food allergies/intolerances?

Near the end of the cleanse, something even weirder happened. I woke up one morning and, while putting in my contacts, noticed that the whites of my eyes had turned yellow. I went to a doctor and she confirmed that my eyes were still yellow. She ran blood tests to check liver function, and since I hadn’t had a thyroid panel in a long time, ran that, too.

I was able to follow-up with my regular Nurse Practitioner, C, a week later. “Your tests are perfectly normal,” she tells me. “Every value you have is in the center of the range. Good job with the self-regulation of your thyroid hormone dosage, by the way – that’s perfectly in the center of the range, too.” I should point out, if I haven’t already, that C told me to dose my thyroid meds based on my heart symptoms rather than worrying about the lab values. Better to be hypothyroid than in heart failure as far as I’m concerned.

She then asked, “Were you vaccinated for Hepatitis B?” I told her I was, right before college. “Well, that’s odd – you have no antibodies, no immunity to Hepatitis B. I think you’re a non-responder as far as vaccines are concerned.” Makes sense – I’ve contracted diseases I’ve been vaccinated against (like pertussis) or already contracted and should have subsequent immunity to (like chicken pox – I got it twice). This explains a lot, though. My immune system is perfectly happy to attack tissues that belong in my body, but send in a foreign body and the immune system fails to respond. This, to me, is clear proof that something is wrong with my immune system. More confirmation for the ME/CFS diagnosis.

A few days later, I started to feel ill, My lymph nodes swelled up, I got a little congested… I (foolishly) thought I just caught a cold. Heh. I wish. It turned into the full-on flu. I suffered from that for most of a week, and have spent the last week recovering. The acupuncturist offered her theory about the situation. She said that maybe the jaundice was the first sign of the flu. Maybe it got stuck in the most vulnerable organ I had and then replicated there. I could buy that. Nothing about me is normal.

Luckily, I recovered in time to attend a conference on autoimmune disease at a local hospital today. I will devote a full post to that in the future (I’m no longer going to try to predict when, as my illnesses keep getting in the way). I am glad I made it to that conference – it seems that the research is going in the right direction.

In the midst of all this, I made a career move. Dr B has been telling me that I should get into patient advocacy. He thinks that I have some really good life experience, and I have a lot to add to that field. After dealing with a situation in which a friend was being bullied into seeing what other people thought was “the right doctor” for her condition, I realized Dr B was right. I have had to deal with so many health care choices, doctors who don’t listen (or are just plain wrong), other people who think they have THE answer, and other trials and tribulations of being chronically and mysteriously ill that I have a special insight into the whole process. An insight that I can use to help others get what they want and need out of health care.

I looked up information on how to become a patient advocate and learned that really, there is no process. You can just decide to do the job. There are no certifications or degree programs. There are classes and certificate programs, but they don’t actually certify you to do anything – they’re just educational. I might take some of those classes at some point (especially the HIPAA classes), but yeah, I’m ready now.

My plan is to make educational material and do talks about how to get what you want out of health care. Medicine is an uncertain science, and there is rarely only one right way to treat yourself, especially with a chronic condition. I want to point out that patients have rights to refuse treatment if they so choose. I want people to realize the doctor works for them, and that if he/she isn’t working out, they don’t have to stay with that particular practitioner. I want to teach people how to take control of the situation by doing their own research and getting a doctor to listen. I want people to understand that they, not the doctor, make the healing happen. I want them to really think about how they want to care for their health (i.e. natural vs. pharmaceutical, preventative vs. reactive) and go get that. So, I’ve started by attending the autoimmune diseases conference. I’ve also got a nebulous outline for my first talk.

I’ve already had to put my patient advocacy skills to work with our fluffy friend, Duck. For the last few years, Duck has been plagued with diarrhea. I could usually make it go away with lots of probiotics, but this time, it stopped working. I took Duck into the vet and learned he lost roughly half a pound (this is a lot for a twelve pound cat). The vet did an ultrasound, and showed me that Duck has inflammatory bowel disease. His intestinal walls had thickened in some areas, indicating that immune cells are coalescing. The doctor then informed me that Duck would need to be on corticosteroids and chemotherapy for the rest of his life.

I reminded the vet that I foster, and suppressing Duck’s immune system long-term seemed like a poor choice, given that I invite cat disease into my home with every litter I take. “You’ll just have to cross your fingers with that, I guess,” he told me. I asked what long-term effects the chemo might have, and he said that there was an office cat who had been on chemo for seven years and he was just fine. The vet then gave Duck a steroid shot and sent me home with the prednisone and chemo meds.

I left with the medication, and burst into tears on the way home. The vet nurses told me that I would have to give Duck the chemo meds while wearing gloves – that the medicine wasn’t safe for me to touch. I thought about the idea that, if the medicine isn’t safe for me to touch, how could it be safe for my two-year-old baby to take? I always knew he could die young, but to die of the effects of chemo? I then realized that the principles I wanted to convey in my patient advocacy practice apply here. I sought a second opinion with a holistic vet.

This vet, along with several of my cat harboring friends, thought the suggested protocol was extreme. The holistic vet offered me supplements, along with a vaccine detox (unlike in human medicine, veterinary medicine recognizes adverse reactions to vaccines) to try first. Luckily, Duck likes the supplements, and started eating as soon as the steroids wore off.

He hasn’t had any recurrence of the diarrhea yet. I’m not taking steroids off the table entirely, but I am never going to do the chemo. I decided (after reading about how the outcomes of most cancers do not improve despite treatment) that I wouldn’t treat cancer in myself or my cats (save for easily treated versions like early stage melanoma). No, I cannot justify the use of chemo in any circumstance.

In other news, I picked up a foster kitten about a week ago. Meet Mozzie:

When he sits, Mozzie has a heart on his left flank and a broken heart on his right flank. When he stands up, the markings are less obvious – they’re more roundish blobs.

Mozzie was shy and ill when I first got him. He hid behind the toilet and hissed when we went in to visit. It a matter of days, Mozzie cracked – he loves us now, and turns out to be the most affectionate kitten. Mozzie loves to be held, he loves to purr, and he loves to simply be near his people.

In addition to all the above events, this month I got wind that yet another of my friends is expecting. I’ll reveal who in a few months – she wasn’t telling anyone at first, but decided a few days later that maybe she did want to tell. I’ve informed a few close friends, but I somehow don’t feel right announcing it here just yet. I am knitting and crocheting baby stuff like crazy now. I am squeezing in a few other things, but not a whole lot. I fear Michael may never get his socks!

Well, maybe I’ll work on them when we go on the Caribbean cruise we also planned this month. More details about that in the future.

Told you the world changed this month!

The only thing that didn’t change is that I’ve kept knitting. I finished K’s winter garments:

But I forgot to photograph the mittens before I mailed them! Oops. I’m going to visit her and Dr B in May, so I’ll try to get a shot then. Maybe I can a picture of the socks I made her for Christmas as well.

I’m also almost done with Dr R’s giant socks. I’ll see if I can get a shot if him wearing them on Monday (because I should totally have them finished – they are worsted weight socks, after all…). I’m also making progress on Jen’s crayon blanket. Her little girl is due in June, so I don’t have a whole lot of time left.

Well, I have a lot of work to do. My next priority is talking about the autoimmune diseases conference, so be on the lookout!

Superstition

I once heard about a superstition which dictates that whatever you do on New Year’s Day, you’ll be doing for the rest of the year. I’m not generally one to buy into that sort of thought process, but I figured that maybe it couldn’t hurt to indulge the idea this time. It’s not like there are bad consequences for doing so. It was for this reason that I was pretty thrilled that I woke up just before 7:00 this morning. I felt somewhat clear-headed, and I even had a little ambition. I tried to get the house clean the day before, with the idea that if I had to do heavy housework on New Year’s Day, I would be doomed to live in a filthy house that needs that sort of work for the rest of the year. So, it was about silly little things like that.

Not long after I woke up, I took a little pseudoephedrine. I hate to do that, especially in light of my decision to indulge the above superstition, but I figured I could just keep in mind that I’ve been popping large numbers of pills every day for the last year and a half, and smaller numbers for the previous 11 years. This isn’t really anything new. It’s not just the pill popping that I was reluctant to do, though. It’s dangerous to use pseudoephedrine for the long-term, but it is used off-label to promote wakefulness. It was my backup plan for when I really wanted to participate in something, like a vacation or what have you. I made my peace with it, as long as I only use it as needed, for short periods of time only. Besides, I’m already taking medication to increase neurotransmitters in my body (pseudoephedrine increases norepinephrine concentrations by releasing what you have stored in your neurons). I went to see C a few days ago, and she said that neurotransmitters are the best way to treat the neurological pain I was having. She even used the dreaded f-word, “fibromyalgia” to describe what my pain sounded like. She hasn’t officially diagnosed me with that condition, but it often comes with CFS/ME. While I wasn’t surprised to hear her say it, I didn’t want to hear it. Treatment for fibromyalgia is palliative (meant to relieve suffering, but not cure the condition) at best.

Anyway, I decided to spend the day accomplishing things. The feeling of being able to just do what I need to do is the thing I miss the most since getting sick. When I have a good day, I tend to squeeze every bit of productivity out of myself I can. I was determined for this to be that sort of day. I first washed all of the wine glasses from our party the night before. I did a couple of loads of laundry. I fed all the animals. I took a hot bath. I caught up some of my newspaper comics. I should explain that last one – Michael and I are the last newspaper subscribers on the planet. We both love newspaper comics, and there’s nothing like sitting down with the newspaper and reading the good ol’ funny pages. Well, because some days my brain is so foggy, so scrambled that I can’t even read, Michael saves that comic pages for me so that I can get to them when my mind is clearer. As of this morning, I was backed up to the beginning of October. Today, I read the entire month and am now up to November. Still behind, but less so than before. I went through older blog posts today, and learned by this time in 2010, I was behind as far as August. Back then, I had a billion kittens to care for as well. I’m certain this is not coincidental.

By noon, I was tired. I thought about popping another pill, but decided that there was really no way I was going to sleep for more than an hour or two. I had Michael massage my neck and ridiculously painful shoulder, then settled in for the nap. Feeling slightly more refreshed, I rolled over and looked at my clock – it was nearly 10:00pm. My nap was 10 hours long. What a defeat.

I tried not to be too upset about this. I told myself this morning that I was going to focus on the things that I did manage to do, and try not to condemn myself for what I couldn’t do. You see, somehow I still haven’t accepted that I’m truly, honestly sick. I keep trying to convince myself that if I just talk myself into it, I can just magically overcome this whole thing. Maybe I am prone to superstition after all. I mean, this is the behavior that I hate most in others: the tendency to accuse the people who have a chronic disease of not wanting to get over the illness, thus implying the disease is in the sufferer’s head and it is her fault. I do not think this of others who have a chronic condition, but somehow I think it of myself.

I think it will help me to show you some of things I’ve accomplished in the last few months. Much of my knitting has been for Christmas presents, so I haven’t really been willing to post it on the internet. Now that the gifts have been given (mostly, at any rate), I’ll show them to you.

I made these for Dr B. He lives far away now, but since we still talk, I thought it was only a nice thing to do. These are the brioche hat and scarf from Weekend Knitting. The yarn is Berroco Vintage in Mocha and Mushroom (5103, 5104).

I also made the pair of socks I referred to in the previous post for Dr B’s wife, K. She promised me she would get a picture of her wearing them so I could post it online.

I finished a dress I was crocheting for my friend Julie’s baby. This has not been delivered yet because her family is spending Christmas in Denmark. Plus, it’s still missing buttons. The pattern is Dixie Belle, and I used Patons silk bamboo (ivory) and Artfibers Casanova (dark purple).

I made this sweater for my nephew, Blaine. His parents tell me he loves it. The pattern is Lion Brand’s “Knit Coastal Stripe Pullover” in Knit Picks Swish Worsted, colors Twilight. Doe, and Bark.

I sent the “yarn shirt” to Alexis as well. It is bigger on her than Blaine’s sweater is on him, but she’ll be able to wear it forever. She was ecstatic, if the pictures her parents sent me of her opening the present are telling me the truth.

I plan to knit one more small present for Julie, but I don’t want to mention what it is until she receives it. She knew about the dress for her baby. I also have the “puerperium cardigan” (Ravelry link) on the needles for my friend Vickie‘s new baby, and I’ve swatched for the “Color Me” afghan for my friend Jen’s new baby.

There is a catch to the projects on my hooks and needles. I mentioned ridiculous shoulder pain earlier. On New Year’s Eve, the pain in my right arm got really bad, to the point where I was having trouble lifting my arm to give my friend a high-five. I thought it would be just a one day thing, something brought on by the fact that I skipped a dose of the pain medication so I could stay awake (the medication wipes me out – if I take two pills in a day, I can sleep about 18 hours easily). I resumed taking my pain medication as soon as everyone went home, but the pain is still there. I think I’m on track to losing much of the use of my right arm. I’ll know Wednesday whether the decision regarding if and when I have to give up bowling has been made for me. My concern is that this might mean I lose knitting, too. Maybe I can outrun it, get my projects done before my arm gives out. I can do that, right?

Finishing a few things

After I really absorbed my last post, I was overwhelmed. So many projects that I’ve undertaken have just gone uncompleted. Before I started getting better, I’d have seen this list and just given up. Maybe I would have gotten a bucket of ice cream and parked myself on the couch. Even more likely, I’d have cast on a new knitting project, precisely because I don’t need another in the works. Either way, I’d have seen it as doom.

This time, I managed to see the list as a challenge. I know I can complete these things, I just need to do it. I’m better now. Sure, I’m not 100% better, but I have more hours in my day, and while I can’t take on anything too physically demanding, I can certainly get some knitting and organizing done. No excuses, just action. Roar.

I finished the dishcloth and Michael’s socks within days of one another. Now I feel like I have enough dishcloths to get me through a few more months, so I shouldn’t be casting on any more of these for myself. If any of the people I supply with dishcloths runs out (for example, my sister-in-law), well, then I might make more.

Michael was pretty pleased with his new socks. Now that we live somewhere that it snows (apparently all year round these days), we’ve learned to appreciate wool socks over cotton. I intend to supply both of us with at least a week’s supply of socks, but it takes time. This first pair for Michael gave him great joy – he put the socks on immediately, happily remarking that they fit perfectly. At least my hard work doesn’t go unappreciated.

Since we’re leaving for Boston soon, I had to get the kittens in stable enough condition to be moved. They were all so sick for so long, just like all the other cats I’ve gotten this year. I’m pleased that this time, at least, I didn’t lose any.

I feel like a bad person for this, but I am ready to be done with Persephone. She is a wonderful cat to people. She’s very affectionate, and she loves to snuggle in our laps. She’s also a great mother, very attentive to the needs of the kittens, even when she’s sick. The thing is, she is the most cat reactive cat I’ve ever fostered. On at least five separate occasions, she darted past us to get out of the kitten room and chase my cats. Most mothers would just make sure the invaders were chased away from the vicinity of the nest, but not Persephone. Oh, no, she’s mean. She hunted my cats with such a single-minded focus that I have no doubt she could catch and kill prey. She, in all her seven pound glory, took Serra and all of her seventeen pounds down. Fortunately I was able to break up the fights without injury to myself, but the cat hunting was just not acceptable behavior. It would have even been OK if it had just happened once, but Persephone actually made it her goal to look around me and see if she could see a cat, even one minding its own business, to viciously attack. She will be going to a single cat household when she’s done being a mom.

Veggie and Janina were pretty easy kittens. Once Janina learned to eat, she started to grow and play like a normal kitten. I’m glad I got Veggie, too, because he still needed a mommy. Persephone cleaned him up really well so he started to get super cute. These two should move on to their forever homes very soon!

The little kittens had some trials. For some reason Pomegranate stayed healthy while his sisters got very, very sick. The girls’ noses got so plugged up they couldn’t eat, so I had to administer fluids and force-fed meals to them many times a day. Winter got sick first, followed by Summer. Summer bounced back after a few days, eating like her life depended on it. Winter just had no interest in eating. I could get her to drink milk, but only a few mouthfuls at a time. Otherwise, all she did was sleep. The differences in the kittens are staggering.

These two were identical in size when I originally picked them up. Winter is the same size she was three weeks ago, but Pomegranate is so much bigger. He’s really handsome, too. It’s hard to believe I couldn’t tell them apart when I first got them.

He has the prettiest face!

Winter should look just like Pomegranate. She should have a fluffy, soft face. She should have a chubby belly. Her eyes should be bright and clear. But that’s not how it is.  If you click on the pictures, you can see that Winter’s eyes are very cloudy. She seems to be blind, but I think it’s temporary. On the first day of her turn for the better, Winter bumped into things when she walked and cried when she wandered away from the rest of her family. Today, she seems to notice shapes. Young kittens really do have a remarkable ability to heal after a serious illness. She may always have special needs, but it may not be as bad as it seems right now.

At least her eyes no longer look dead.

Summer gave up a for a few days, but she managed to make a swift recovery. She is still noticeably smaller than Pomegranate, but she doesn’t seem to have the other damage that Winter incurred.

She is gonna break someone’s heart – I just know it!

I can’t claim to understand why the babies turned out so differently from one another. They share genes. For goodness’ sake, Winter and Pomegranate look just alike! They just have such different immune systems.

Speaking of immune systems – the doctor has finally gotten around to working on mine. I am on a new supplement that contains resveratol, a compound found in red wine. When the doctor gave me the supplement he said, “This will either make you feel really bad or really good. Either way, call me and we’ll adjust the treatment.” On the bright side, it made me feel really good. I managed to eat something I am sensitive to today (either there was hidden dairy in my food or I have a soy sensitivity), and the reaction wasn’t as bad as it generally is. I’m still avoiding the things I know make me ill, but a reduced reaction is a good sign in my book.

I’m still not supposed to have caffeine, and I can eat rice only rarely, but I have tried both of them with no side effects. That part, is at least good. I really think this diet was worth my time.

Now I am going to wrap up a few more things before we head out for our trip. The kittens are going back early in the morning so I have time to take care of the loose ends around the house. It’s nice to be finishing things rather than starting them!

Surrender

First, the big news. We returned Cassie to the shelter yesterday to be adopted. She was done with her kittens – she actually started swatting at them when they tried to nurse. She just cried every minute that she was locked up with the kittens. This morning she managed to let herself out of the kitten room. I’m not entirely sure how it happened, but I am guessing it has something to do with me not closing the latch properly.

The good news is that Orion, who had not been gaining much weight, has been eating like a champ since he can’t nurse anymore. I think that the milk he could get was taking up too much room in his tummy and not delivering enough calories. As much as it hurts me to separate a mother cat from her kittens, I know that this was the right thing to do. I’m not sure that the kittens miss her all that much.

I let the babies out to play while I had Carisa and Ryan over for bridge and other board games. Orion is really needy, so we put him in his auntie Carisa’s pocket. He is total kitten cuteness! Check this out: http://www.youtube.com/watch?v=6aUHY39xBls. Leo and Argo had a great time with their new toy. Bridge night was wild for everyone!

The swatch from the last post is coming along. I just love the yarn – it feels surprisingly sturdy and soft. I highly recommend Berroco Comfort sock yarn. The stripes are subtle, yet attractive. Very nice indeed.

I spent a great deal of time this weekend not knitting. My old computer desk was falling apart. Whenever I bumped the side of the desk, the keyboard tray and all that was on it went crashing to the ground. Serra thought it was just great to jump up on top of it (since there really was no desktop space to lay on) and pluck thumbtacks out of the corkboard. None of it was working for us.

So, we bought a new desk. I was tired of all the college furniture we have – it is all particle board and it is all worse for the wear due to our frequent moves. I went to my favorite real wood furniture store and found this desk on clearnace. I love this desk. It has plenty of space for all of my junk, plus extra space to put a cat bed. Everyone has slept there at some point already. Buttercup was there in the picture, and Serra and Wesley are there right now sharing the bed. It is truly a miracle.

The desk did not get so well organized on its own. I spend hours unloading baskets of desk junk into the drawers and cabinets. I set up the computer with some help from my husband. I know how to set up my computer and all the peripherals, just for the record, but I am a very small person and I cannot reach everywhere to thread the cords through.

I learned a lesson this weekend. I was sitting on the newly taller desk chair organizing all the junk, when all of the sudden, this happened:I can’t win.

Arrived in Florida

We arrived in Tallahassee last night on time. The flight wasn’t so bad, actually. It was on Delta, and they asked us to mention in our blogs that the first leg of our flight from San Francisco to Atlanta was a half hour early!

The flight itself was an adventure. I brought 3 knitting projects with me, two of them on double pointed needles (dpns). Keep in mind these needles have to be metal now, due to Serra’s love of eating all destructible knitting supplies. When they got to my bag in the scanner, they stopped the x-ray machine. I just kept thinking “oh, s^$t, they’re going to confiscate my needles.” Apparently, I’m a bit paranoid, because it turns out they only stopped the machine due to a backup that I hadn’t noticed down the line. (Wake up and pay attention for once will you, sheesh!)

We boarded the plane, and I had seen that there were 2 open seats. I kept my fingers crossed that we wouldn’t have a third seat mate, but the worst happened: not only did we get a seat mate, but he was really sick. His nose was constantly running and he looked sweaty and gross. My husband had to sit next to him for the full 4 hours, and apparently the guy had bad breath. I have a weak immune system and I catch everything, so I expect to have the flu in a few days, wrecking my trip. Seriously, next to the screaming baby, that is my worst nightmare. Oh, the agony. I kept that bottle of Purell out the entire trip. I’m not a germophobe, but I do resent people who come to a place where they either are in close contact with other people or in a high touch situation (like dance class) with a raging cold. There are people who can be killed by contracting things like that. In my case, I just stay sick for months. Did I mention that travel stresses me out?

At least on the trip I was able to make progress on my socks.

I have to get going in a few minutes (we are heading for our friends’ beach house in Panama City), but I’ll leave you with a final picture:

Serra believes she is a small cat – she’s not, she’s 16 pounds, close to 17. She loves to get in my shoe boxes. See how that box is bent?